In this episode, we’re talking about the upcoming LOOKING. DIFFERENT. event for NCHPAD and the UAB Center for Engagement in Disability Health and Rehabilitation Sciences (CEDHARS) with Riva Lehrer. Riva is an artist, writer, and curator who focuses on the socially challenged body. 

The event will feature the artwork Portrait of Rosemarie Garland-Thomson from Lehrer’s exploration of cultural depictions of disability, a discussion between Lehrer and Rosemarie Garland-Thomson, and a short reading from Lehrer’s critically acclaimed memoir, Golem Girl.

We talked with Riva about her collaboration with Rosemarie Garland-Thomson, her creative process and what the piece means to her.

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Episode Transcript

Quick Navigation (click the linked text below to jump to a new section)

• Intro
• Event Details
• Riva’s professional background
• Riva’s collaboration with Rosemarie Garland-Thomson
• Riva’s creative process with other collaborators
• The creation of Portrait of Rosemarie Garland-Thomson
• Conclusion

*Edited for clarity

Intro Music 0:00

Host 

This is Wellness, Health & Everything Else: a NCHPAD podcast.

Welcome to Wellness, Health & Everything Else: a NCHPAD Podcast. NCHPAD is the National Center on Health, Physical Activity and Disability, the nation’s premier center dedicated to promoting the health and wellness of everyone. In each episode, we’re exploring topics at the intersection of health, wellness and mobility limitations. If you have an idea for a topic, would like to learn more about a topic or are interested in our free resources, programs and partnership opportunities, email us at nchpad@uab.edu, give us a call at 866-866-8896 or check out our website at nchpad.org.

Music interlude 0:46

Host 0:51

On May 8, NCHPAD and the UAB Center for Engagement in Disability Health and Rehabilitation Sciences, or CEDHARS, will be presenting a special event called LOOKING. DIFFERENT., an event that explores cultural depictions of disability. The event will feature a painting of Rosemarie Garland-Thomson by Riva Lehrer entitled Portrait of Rosemarie Garland-Thomson. Rosemarie Garland-Thomson is professor emerita of English and bioethics at Emory University. Riva Lehrer is an artist, writer and curator who focuses on the socially challenged body. Lehrer’s memoir, Golem Girl, won the 2020 Barbellion Prize for literature and was a finalist for the National Book Critics Circle Award. In this episode, we talk with Riva about the portrait, her book and the impact of events like LOOKING. DIFFERENT. Here is Riva discussing her professional background and the reason behind the work she does.

Riva Lehrer 1:41

I am primarily a visual artist. My career for the last 25-ish years has been based on doing portraits, making collaborative portraits, with people who deal with stigma. But before I get into that, I’m also a writer. I have a book out called Golem Girl, which is a memoir about my life as a monster. And that is not hyperbole. My portrait work comes out of my knowledge of the history of how disabled people have been, and to some extent still are, viewed by mainstream culture, which is as monsters, freaks, villains or pathetic wretches. Even though there’s been a lot of progress, I was watching something recently, and once again, the “bad guys,” had facial anomalies, [and] looked a little animalistic. I mean, it just does not go away. The idea that being physically different and being evil are deeply intertwined, so, screw it I’m a monster. So what I do is, not only are these collaborative portraits, [but] I specifically give my collaborators a lot of power and control over how they’re going to be depicted in their image. I try very hard not to make any images that will be painful for them to look at later.

Host 3:34

We asked Riva about how she met Rosemarie Garland-Thomson and her initial work with her.

Riva Lehrer 3:39

I’ve known Rosemarie for decades. There used to be a wonderful series of yearly conferences through the Society for Disability Studies all over the country. These were fabulous, and unfortunately, SDS is essentially no more. But I met almost everybody who has become important or dear to me at these conferences. And so, Rosemarie was one of the people whom I met. She was doing work on the bioethics of how medicine treats people with disabilities and medicines, intersections with eugenics, which was all fascinating. She also had done a book called Freakery, one of the first (if not the first) books looking at the idea of freakishness in concepts of disability. Then she followed up [with] a book called Staring: How We Look. And at that point, she asked me if she could include my work in the book because her work has really been about visual perceptions of people with disabilities. And so our work was really intersecting at that point. And so over the years, I’ve contributed to things she’s done, I’ve spoken for her events and vice versa.

Host 5:17

Riva also discussed her creative process with other collaborators.

Riva Lehrer 5:22

For a number of years, I’ve been doing a portrait series called The Risk Pictures. So I don’t just usually just do portraits. They’re usually within series that are asking a coherent question, furthering my ethical obligation to my collaborators. By which I mean, I know it’s very risky for someone to sit for me. It’s a hard thing to sit for a portrait. It’s a hard thing to see your visual representation show up in someone else’s hands. Also, people with disabilities have had very little control over how they are depicted. So my first obligation has been to make sure that the people who work with me are given as much control as I can within the constraints of making an image. But the second part has been my interest in making things difficult and vulnerable for me, so that as we’re working on a portrait together, there are things at stake for me, besides the fact that this is how I make a living. And if I can’t sell the image, it’s months and months out of my life, and thousands of dollars out of my pocket to make something that may never be realized.

So, what I have been doing, before COVID, was inviting people to — originally my studio was in my house, which is where I am right now — and so people would come and sit for me here. They had to commit to five three-hour sittings in total, at least. The plan was, at each sitting, we would work together for two hours, and then at that mark, I would get up and leave my apartment and leave everything that I had under the control of the person I was working with. So they had permission to do anything they wanted in my house with no constraints, with the promise that I would not ask any questions when I came back. They were welcome to tell me what they’d done, but I wasn’t going to ask. That could have included stealing things. I know people slept in my bed. I know they ate out of my fridge, went through my computer, I don’t know what else. But the other part was, when I left, they had to alter their own portraits. Otherwise, the whole process would come to a halt. So they had to do something to take control over their own image very literally. Draw on it, write on it, erase things, do something.

Host  8:29

Here’s Riva discussing how she collaborated with Rosemarie for the painting that will be featured at the LOOKING. DIFFERENT. event, and the meaning behind the piece.

Riva Lehrer 8:37

In 2019, I think, Rosemarie got in touch with me and said that she had time to sit for me, and I’d actually been in the middle of getting ready to do another project, but she’s very hard to schedule with. So I was like, well, okay, and we started to set up what the image was going to be, and then COVID happened. And I thought we would have to cancel, but she really wanted this to go forward. So I commissioned a photographer in San Francisco, where Rosie lives, to go and do a photo shoot while I art directed over Zoom. So we did that for a few hours, and Rosie’s husband helped. It was great, [we] got some really good photos, but I thought she was going to come and sit for me live. So I mocked up the piece using the photographs. It turned out there were some problems with them. The photographer hadn’t photographed Rosemarie’s feet, stuff like that. The dress Rosemarie was wearing wasn’t really going to work very well, so I ended up having to invent quite a bit post facto. And I waited for her to come in, and it just didn’t happen. We did a little bit of posing over Zoom.

We ended up at a conference together in San Diego, Santa Cruz, rather, in Santa Cruz, and I did some follow-up photographs there. But the whole portrait took me almost two full years because of these problems. But she was very brave, because the whole time I’ve known Rosemarie, she has kept a shawl around her shoulders and her arms, or she’s worn garments with very long, flowing sleeves, various ways of hiding her arms and hands. She specifically, in this image, wanted to display her hands and arms. Now, I never ask anybody to do anything that they are uncomfortable with. I might encourage them to take a risk, but that is different from saying, “Hey, I want you to do X” and the person balking. So this very much was her decision.

The decision was that she would be holding a vitrine, and I’ll get to that in a minute, with a fetus in it that has her exact impairment, bilateral, asymmetrical syndactyly, and she has a rare form of syndactyly. The fetus is a clock, and different things happen in fetal development on a pretty rigid time scale. One of the things that happen in the development of the limbs and the appendages and phalanges is that you start out with these little tiny, like, limb buds, like little tiny, mini, disconnected bones in the sack that is the fetus. If you imagine a fetus as kind of an outline of a humanoid shape, there’s a point at which, I think it’s after the skull and the spine bones are becoming present. I think the next part [is] the proto-limb buds for the arms and legs. So, these buds aren’t connected yet. They start to lengthen and connect to each other, but they’re like paddles. There [are] points in human development that we’re a lot like dolphins, you know, or creatures that have kind of mitten hands and feet, for lack of a better word. And then you get something called cell death. Let’s say the bones of your fingers have come together, and now they’re contiguous, and they’re attached to the — so in the arm, let’s say in the forearm, you have the radius and ulna, the bones that make up your forearm and your elbow, and those go down to the carpal bones, which are your wrist, which are kind of an arc. Then those go to the metacarpals, which are the bones at the back of your hand, which are contained within the flesh of the hand itself. Then you have the phalanges, which are attached to the palm in the back of your hand, and the phalanges are supposed to get a signal called cell death so that they start to differentiate and become separate fingers. Now in syndactyly, for both the hands and feet, you can fail to get the signal for your hands – your fingers – to differentiate. You can fail to get the signal for some of the limb buds to even grow. Sometimes the fingers fuse together. With Rosemarie, some of her fingers are actually the bones for more than one finger fused together. The same thing can happen with the lower limbs.

In Rosemarie’s case, I believe it’s only the upper limbs. And then there’s a related condition called polydactyly, where the signal is to make too many fingers or toes. And I had a cat once, Gia, with polydactyly. She had 13 front toes and 11 toes on her rear paws, and she always looked like she had giant furry mittens on. She was very cute, and she knew it. She was a terror. So you can go in either direction that the signal can be: there can be a paucity of signal or an overreach of signal. So in Rosemarie’s case, you have these, these fusions, and she also has some – I believe one arm. I think it is her anatomical right arm, [which] has all of the correct bones, but I believe [her] anatomical left is, I could have this backward, but the upper and forearm bones got partial signaling.

So Rosemarie is a very beautiful woman, and I think it must have been a little jarring growing up to be quite beautiful and to also have these variant arms. Our culture wants women to be seamlessly beautiful, and she’s also brilliant. So I think that there might have been some emotional pile up there. And this is just me, but I’ve worked with a lot of people by now and talked a lot about self-image. So when we went to do our portrait, she really took a step and decided to bear her arms and hands and to have this vitrine. And so I am going to back up one more thing, and then I’m going to talk about the painting itself.

I teach a class at Northwestern Medical School in medical humanities using something called the Aery-Krantz collection. And that is a collection of more clinical vitrines. The vitrine that Rosemarie is holding in the painting is something I made up. It’s more decorative and is green glass, and it’s not the kind of thing you would see in a medical school. In the class that I teach, there were these fetuses collected in the ’40s and ’50s, I believe, by Dr. Aery and Dr. Krantz. And a third of the collection is “normative” fetal development, showing the regular fetal clock from, you know, proto zygote, all the way to full term. And then at least 20 fetuses of infants with variations – so spina bifida, cleft palate, conjoined twins, syndactyly, polydactyly, gastroschisis, sirenomelia – a lot of variations in the limbs and in the abdominal sac. For instance, when your abdominal sac doesn’t close and the organs develop outside the body, all the ways the limbs can fail to develop or fuse together. So I teach a class where med students come for six weeks and they are taught to draw by choosing one of these fetuses as their subject for the term. But at the end of the term, they have to do a 15-minute presentation on the life of someone who’s lived in the last 25 years with the same or an analogous impairment. Some of these impairments are not survivable, like anencephaly, where the brain doesn’t develop at all. So if you are drawing a fetus with anencephaly, you would choose a person with microcephaly. And the point of that is that when you see fetuses in med schools or medical museums like the Mütter it’s to tell the public one of two things. This doesn’t exist anymore, we’ve cured it out of existence, and look at this weird thing that used to happen to people but medicine has gotten rid of it. Or it’s a promise that that will happen. Conjoined twins, look at all the ways that we’ve managed to separate conjoined twins, for instance. Or spina bifida, my impairment. It persists very much, but its treatment has changed since I was born. And the problem with this is that it’s never about the lived body. It’s never about the fact that we live like this. I have friends, like the people in the jars at the Mütter Museum or Northwestern, and I want my students to understand that we’re not tragedies. You know, we’re not mistakes. We need support to live our lives, but we shouldn’t have died, and we shouldn’t be eradicated. We should be helped to live the life that we envision for ourselves. So I really work hard with my students to have them understand this. And they tell me – most of them tell me – by the end of the semester their ideas about disability and impairment have changed, at least at the moment. They say that they would talk to a patient or a parent very differently than they would have otherwise.

So in Rosemarie’s portrait, the composition is very deliberate. There’s a shawl that’s one of the ones that she has used for years on the wall behind her. Her husband did a beautiful job of draping it. I wanted it to be a little bit, a little bit like a blade coming down. And then she has another very beautiful shawl that cascades over her shoulders but does not hide her. And then you have the dress with the skirt that flows outward, and then she’s holding the vitrine. And the way it works is this: it’s an hourglass. So that upper triangle of the scarf is the upper part of the hourglass. It comes down to the flow of that sort of watery scarf [that] is standing in for the flow of time and sand. The vitrine is the pinch point between the past and present future, and the skirt completes the hourglass. So the whole piece is about the way that the body that we are born into is going to tell our story. And it evolved slowly for me as I was doing the sketches and looking at the pictures and going, “Oh, my God, I know how to do this.” And partly it was just found in the photos. And partly it just really snapped together for me as I started to make the piece. One of the nice things that happened is that in the photographs on one side, she’s being lit by sunshine. And actually, the same thing has happened to me right this minute. My window is over there, and my incandescent lights are right here. If you were able to see the wall behind me, you can see that there is a yellow stripe in the shadows behind me, and then there is – there’s yellow and blue on the walls behind me. And that was going on in the photographs, where half the light was coming from the sun and half the light was coming from the interior. And I could have normalized the whole thing and just chosen one. But I loved that thing of being caught in realities, two moments. The collision of two moments. And so if you look carefully at our portrait, you’ll see the side that is sunlit and the side that is lamp-lit in the piece. The other funny thing is that I decided she needed to be wearing a red dress, and she wasn’t in the photos. So for three weeks, I went to thrift shops and looked for red velvet evening gowns. I took pictures of myself in the dressing rooms of these thrift stores, and then I bought one and brought it back with me and had it pinned up on the wall. Then I took it back to the thrift store when I was done. But painting red velvet is so difficult. I had no idea. I had to get a friend of mine, who’s a brilliant painter, to come in and tell me. So it’s really hard to darken red, and I put in the highlights and they look orange or they look pink and how do you have bright red and dark red? I could have done, blue or green and been fine. Red was just, I ain’t going there again anytime soon.

So that’s the story of that portrait. I know it means a lot to Rosemarie and really is a moment of risk and bravery. Even though she never did come to sit for me, just the fact that she let me paint her hands and arms was a huge leap. And I hope I did credit to her beauty and her intelligence. Thank you so much to UAB and Jim Rimmer – thank you so much for making a home for this piece. You have no idea what it means to me. So thank you.

Host 25:46

Thanks for listening to Wellness, Health & Everything Else. We’ll provide a link with show notes, including full transcripts, links and more in the podcast description. If you would like to learn more about the LOOKING. DIFFERENT. event, visit the links provided in the episode details. If you have questions about our free resources, programs and partnership opportunities, email us at nchpad@uab.edu, call us at 866-866-8896, or check out our website at nchpad.org.

Concluding music